New Directions		Question & Answer		Surgical Spotlight
Mother & Son		Importance of Registries		Helping Others
Research Update		Code of Silence		Patient Advocacy
Patient Perspective

Helping Others While Helping Yourself
through Research and Registries
At age 30, Michael Pasion loves golf. Thanks to screening programs for colorectal cancer, he should enjoy many more years on the links. And because of a new registry that tracks people with colorectal cancer, he might be helping other patients to do the same.

One of the first things this married father of two did after surgery for hereditary nonpolyposis colorectal cancer (HNPCC) here at the Clinic was to seek out the Medical Genetics Program for testing. Through the David G. Jagelman Inherited Colorectal Cancer Registries, he learned about an international effort to gather information from families with a medical history like his. The Collaborative Family Registry, sponsored by the National Cancer Institute, is headed by specialists from the Cleveland Clinic and five other institutions. Collectively, they plan to identify more than 1,200 families with two cases of colorectal cancer and another 400 families with at least three cases. By studying these groups, researchers hope to better understand the causes of hereditary colorectal cancer and possibly even improve screening techniques.

Mr. Pasion has an extensive family history of HNPCC. His late father had two instances of large bowel cancer, one at age 34 and the other at age 40. This condition also surfaced in two generations on Mr. Pasion’s father’s side, with three of these relatives (paternal grandmother, uncle and aunt) developing it at early ages.

Unlike the other dominantly inherited form of colorectal cancer, familial adenomatous polyposis (FAP), HNPCC does not produce hundreds of polyps. Instead, Mr. Pasion had no symptoms. But thanks to early detection, his Lima, Ohio, physician found and removed a malignant polyp from his rectum during a routine screening colonoscopy; he and his three brothers have undergone colonoscopies every two years since they were 21.

Mr. Pasion was then referred to the Cleveland Clinic for surgical evaluation by Victor Fazio, M.D., chairman of Colorectal Surgery. Dr. Fazio discovered and removed another tumor in the small intestine and eventually performed a restorative proctocolectomy (also known as “J-pouch” surgery) to give him normal bowel function.

But more important, he learned three critical things: keep up with screening, know your propensity for the condition and participate in research that may help others. Part of Mr. Pasion’s proactive approach has included genetic testing, through the Clinic’s Medical Genetics Program, which has prompted his brothers to do the same.

“I had no symptoms and felt fine. I was 28 years old and almost put it off. I didn’t take it as seriously then as I do now,” said Mr. Pasion. “And, I almost delayed it for a year. My mom kept bringing it up and finally made me schedule it. Luckily I did. If I hadn’t, who knows what my situation would be now.

“You need to know what you’re up against and what your situation is,” he continued. “Any piece of information or anything that develops that you can use, you should take full advantage of.”

The Cleveland Clinic Foundation is in search of additional patients and their families for the Collaborative Family Registry. For further information, call 800/998-4785.